Monday, May 31, 2010

The GREAT STRIDES Walk in Honolulu was this weekend. This is the last walk that we have family walking in this year. Martin's sister, Maureen, and her husband, Bob, live in Hawaii and walked to support Drew and sixty five roses. I think next year we should plan to attend all of these walks to support everyone who is supporting Drew. I wouldn't mind trips to Connecticut, South Carolina, Chicago, San Francisco and Honolulu! Here is a picture of Mo & Bob at the end of their walk.

We couldn't be more proud of and excited by the support that we received this year. We found out in the middle of March that Drew was going to be living with sixty five roses, and in just about 6 weeks we managed to raise over $11,000. It really touches our hearts that we have so many friends and family members who care enough about us and our family to donate to this cause. We are confident that this support will go a long way in funding research to find a cure for this disease. If you are still interested in making a donation, there is a link on the right hand side of this page that you can do so through.

Thank you thank you thank you again for all of your support, and we hope that we can count on you again next year!

Friday, May 28, 2010

We survived a week on our own! We had our ups and downs, but we are all still alive and sane...a little tired...but altogether not in bad shape. This was our first week without any parents in town to help us out. The laundry got a little backed up, and dishes certainly weren't being washed with the regularity that Meme had been providing, but the house is still standing. Here are some of the milestones of this week.

The whole family made it to Drew's appointment with the surgeons on Monday. That's right, all 5 of us. Ella was exceptionally (and shockingly) well behaved. Lily slept. Drew did what he needed to do. It was a successful trip in my book. Drew's surgery is scheduled for June 10. We've got our fingers crossed that he doesn't catch a cold or anything before then because they will postpone it.

Tuesday was a good day. We pretty much just hung out around the house. The kids all napped at the same time in the afternoon which allowed me some time to do laundry...and more laundry and more laundry and more laundry. You can't possibly imagine how much laundry two newborn babies produce. Between spitting up on themselves, burpclothes, and our shoulders, we probably go through an average of 3-4 outfits a day (per person), about 30 burp clothes, and a number of swaddle blankets. Luckily laundry detergent was on sale at Kroger this week, so I stocked up.

Wednesday brought some entertainment...in the form of traumatizing fear. Saw a snake today. Almost had a heart attack. To preface this, I will tell you that when I was about 10 I saw a little tiny snake out back at my parents house and didn't go out back for the 15yrs following. I am terrified of snakes. We skip the snake house at the zoo. We change the channel if a snake comes on. I'm terrified. And I always have my guard up fearing that one will show up someplace I don't expect and eat me alive...or something ridiculous like that.

So on this lovely Wednesday morning, Ella really wanted to go out in her pool. We got her into a swim diaper and went outside to spray her down with sunscreen, came back inside to put on her swimsuit and headed toward the door. Thank the LORD Ella didn't run out ahead of me because I think I would have just had to sacrafice her. When I opened the door and looked down to step out, there it was - an oval head, beady little eyes, and a slimy scales body, approximately 6 feet long and about 2-3 inches around. Initial reaction - AHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! MARTIN!!!!! Luckily Martin was working from home this week and was in the basement and heard my blood curdling screams. He admitted that he had thought I was overreacting...until he saw the beast! I was shaking, holding all 3 kids. Ella was crying because I wouldn't let her go outside. And Martin was trying to figure out what to do. He said we could either call someone or he could kill it. KILL IT! KILL IT! KILL IT!! No question. Kill the damn thing! So he went outside with a shovel and after a few fatal blows, managed to solve our problem. This thing was huge. Way bigger than a snake in your backyard should ever be.

He went back to work, and I was not about to head outside. So we went swimming in the bathtub. Martin came back up for lunch and told me that he had looked up online to see what kind of snake it was, and was fairly certain that [my thinking: snakes regenerate a new head after killed? Snakes live in herds? Snakes smell fear and are going to overtake our house???] it was harmless. He said that if it had had a triangular head and jaws that we should have been afraid. If i saw a snake with jaws I would be a goner. He said our snake wasn't big enough to eat anything bigger than a chipmunk, mouse, or other small rodent. (In my head I'm thinking our babies aren't that big!! What if the snake ate one of our babies?!) I told Martin that we needed to call someone for our snake problem and he suggested a psychiatrist. Hopefully this is the first and last snake that we will see.

Thursday we had another doctor appointment. I took the twins and Ella napped at home while Martin worked. Its always a challenge to take both babies out together alone. Its only been done a handful of times but it takes an hour to pack a bag with everything you could possibly imagine you might need and you inevitably forget something. All things told, the appointment went smoothly and we made it home in one piece. The afternoon was a bit of a challenge with everyone waking up at the same time and Ella not being in the best of moods. Martin helped to feed Drew while I nursed Lily and sang songs to Ella.

Then I did something bold, something i had never done before. We needed to drop some labs off at the hospital for Drew, and I decided that I was going to venture out with all three kids by myself. First time! Everyone was fed and happy and I figured that the twins wouldn't even have to get out of their carseats. We made it to the hospital, made it into the hospital, did what we had to do, made it back into the car, and then all hell broke loose. Traffic was horrendous and it took us almost 45 minutes to make the 20 minute trip. Everyone was hungry again, or just wanted to get out of their seats, and screaming at the top of their lungs. It was a long 45 min, but I survived and so did everyone else. Going out with all 3 in tow won't be a regular occurrence for some time, but I know now that I can do it...if I need to.

This weekend will hopefully be reasonably relaxing (KNOCK ON WOOD!). Some friends are coming over for dinner (with dinner) tonight, and Martin is off on Monday. His parents are returning on Monday and his mom will be here until the end of June. It was nice to have a week to ourselves but it will certainly be helpful to have an extra set of hands around again.

We're very much looking forward to getting past Drew's surgery. I will try to post updates on here or facebook throughout his stay in the hospital, as much as time allows. Say a little prayer that all goes smoothly! Happy Memorial Day!

Monday, May 24, 2010

Thats the latest weight! The folks at the sixty five roses clinic are so impressed with his weight gain and that makes us so happy. I hope he continues down this path!

We met with the surgeon this morning and he is ready to schedule the surgery for the ostomy reversal. We should hear from his office by Wednesday to put a date on the calendar. We've heard that it takes a few weeks to "book an OR" so I guess we'll see. We're hoping for sooner rather than later so that we can just get this over with and move on with our summer, but I guess we'll just have to see.

I went to a CF Information Conference at Children's this weekend. I wasn't able to make it for the whole day, but I was there for a good part of it and was glad that I went. There were different speakers talking about things like new airway clearance techniques and different drugs and research in the pipeline. One of the best parts of the day was the panel discussion. There were 5 people who had CF (ages, 15, 17, 18, 24, and 40!) as well as two parents who had children with CF. Their illnesses were to varying degrees, as CF affects just about everyone differently. The people in attendance were just asking questions and there was an open discussion and it was good to hear what they had to say. It gives you hope, seeing some of these kids (and adults) looking and living healthy normal lives. Several people had been through a number of surgeries for different complications due to CF. All of the folks discussed the dedication that they had put into their CPT and medication regimes. The parents on the panel who had children with CF discussed some of the challenges that they faced as their kids dealt with having CF.

There was a young girl on the panel, I think 17 or 18 years old. She was about to graduate from high school, however was not going to be able to go onto college because she was waiting for a lung transplant. She called herself "one of the sick ones". It was sad and it was scary. Her brother also had CF, but she said he didn't really have it. He didn't need to religiously take his meds and do all of his treatments to stay healthy. He was relatively unaffected by the same disease that had her in the hospital about once a month for her whole life, and now she was waiting and hoping for new lungs so that she could continue her battle. She was emotional about it, as was the entire conference room of people.

The hardest part of this disease for me so far is fear of the unknown. I'm scared that he will be sick and in the hospital a lot. I'm scared that Lily and Ella will resent him or resent us for the care we will need to give him. I'm scared that people will be afraid of him because they don't know or understand the disease. I'm scared that people will pity him. I'm scared that they won't find a cure soon enough.

I (we) are trying to keep a positive attitude. All things considered, hes doing great right now and we just have to take it one day at a time. We're working on treating him just like we treat the other two, a normal kid who has CF. CF is not who he is, its just something he has. Hopefully we will continue to have to strength and support of our friends and family to fight this and give Drew the best care possible.

The 40yr old man on the panel was married with two children of his own. At the end of the conference he said that the best advice that he could give, both living with CF and now having children of his own (they don't have it), is to be their parent, not their doctor. Throughout their lives, this disease will have them seeing enough doctors. Although you have to help them with their care and their meds, be their parents and let the doctor be the doctor. So thats what we're going to do.

Here's hoping that this next surgery is quick and easy and we can just start living our new normal crazy lives with twins and a two year old!

Sunday, May 23, 2010

The Philadelphia GREAT STRIDES Walk was this weekend at the Philadelphia Zoo. My sister, mom and cousin, and a few friends raised money and walked for sixty five roses. Here are a few pictures. Looks like a beautiful day to be at the zoo!

Thursday, May 20, 2010

One thing that I'd heard and read about patients with sixty five roses is that they taste salty. "How would one know that" you may ask? Great question! I licked him. When he was in the hospital I licked his head and he didn't taste salty (at least not any saltier than Lily, who I licked for comparison). But the other day I was giving him a bottle and I kissed his head and then happened to lick my lips and he sure does taste salty!

CF is usually diagnosed by measuring the amount of salt in a persons sweat. CF affects exocrine glands. Sweat glands are one kind of exocrine gland. The altered CF gene changes how the body handles salt. More salt is lost in sweat. The amount of sweat is normal, but the salt in it is high.

Normal mucus in thin and slippery. In the airways, it removes dust and germs. It also lubricates the ducts and passageways of other organs, kind of like oil in a car. In CF, the changes in salt transport cause changes in water transport. The mucus loses some of its water and is thick and sticky. This thick mucus blocks tubes and organ passageways.

Sweat tests are done to diagnose CF and they can only diagnose it; they cannot predict the severity. There is no connection between sweat salt level and the severity of the disease in an individual. So just because Drew has days where he tastes salty and days where he does not doesn't tell us anything other than what we already know - that hes got CF.

We give Drew sodium in his bottles to replenish and compensate for what his body loses. Right now, its liquid that we just add to his already not-so-tasty bottles (its no wonder the kid hates feeding time!) but eventually we will just have to pour table salt on all of his food and he will also be encouraged to drink things like Gatorade which contain a lot of salt (would have been nice to know that Gatorade was loaded with salt BEFORE the feet swelling started during pregnancy!)

So for anyone curious, yes, he tastes salty, but I just noticed it for the first time a this week. And please just take my word for it - don't lick my kid.

Tuesday, May 18, 2010

Because I have received so many questions about the ostomy that I complain so much about, I thought I would try to explain more about what it is, what it looks like, and how it works, equpiment and all. I'm more than happy to answer any and all questions you might have. Trust me, no question is too gross or to personal :)

WARNING: THERE ARE SOME GRAPHIC PICTURES BELOW. PROCEED AT YOUR OWN DISCRETION.

So below is a diagram of a persons digestive system. Basically, food passes through a persons stomach, all through the small intestine then all through the large intestine before passing through the colon and eventually being pooped out the anus (i'm just gonna go ahead and call it the butt). Its important that food follows this path for optimal nutrient absorption. The colon basically removes water from our waste so that we don't all have diarrhea all the time.

Drew's large intestine was blocked with meconium (very very thick hard poop that the body can't pass on its own) . This caused the entire large intestine to be very distended. To correct this, they cut into his belly and right above where his colon is (see diagram above) they cut a little slit and pulled out all of the meconium. Here is a picture I found online of what a bowel of a baby full of meconium looks like (WARNING - ITS GROSS!!!!!)

You can see just how stretched out and thin this baby's bowel is from being clogged with this poop. So anyway, they went into his belly and pulled out his intestine and cut a little slit in it to pull out all of this thick hard poop he couldn't pass. Then they sewed him back up and waited for a few days for the bowel to heal because of how stretched thin and worn out it was (distended). Then, a few days later, an x-ray showed that there was air in his belly and it apparently was because the bowel was just worn so ragged trying to deal with the meconium that it couldn't handle the air and pressure once it was all clear and trying to work properly that it blew a hole in it. Here's where the ostomy comes in.

So they rush Drew back into surgery, and snip his large intestine right into two pieces - if you go back up to the diagram at the top, its right about where the word Colon in - they just cut it right into two pieces and poked both ends right out his belly. Here is a picture of what it looks like, only he has two sticking out right next to eachother - each end of the intestine (another gross picture - this isn't his, just some random picture i found online, but his looks just like this X2):

Poop comes out this hole, so you can't just leave it unattended hanging out of his belly. When he eats, his food goes through his stomach, all through the small intestine, and then starts through the large intestine until it gets to where it was cut in half, and then it all comes out this hole (called a stoma). If you hooked both ends back together, then poop would come out his butt, but because the path was cut it comes out this hole and collects in a bag we attach to it. Here's what the bags look like:

So to avoid having poop just sitting on his belly (which is both gross and dangerous), you need to attach this bag to his belly, but just have to cut a hole just the right size for the stomas to fit through so the poop doesn't get on his belly. You can kind of see the little hole that is cut in the bag on the left. We have to have two holes, one for each stoma. Even though poop only comes out the one hole, we still need to keep the other one wet, so it stays in the bag. Cutting these little holes, probably about as big as a finger is around, is a pain in the ass because you have to get them just right. Then there is skincare prep that serves two purposes - one is to protect his skin if the poop does leak and get on it (and we all know that happens!), and the other is to help the bag adhere. So we use this caulk and this other paste stuff and try to get this bag stuck as close and tight around these stomas as possible. I have to admit that its getting better. We're only changing the bag once a day, but its still a royal pain in the ass.

Why does the bag leak so much you may ask? Well, there are several reasons. First, remember that Drew's belly is about 6 inches wide. In this bag that is probably 5 inches wide, we need to cut two perfectly spaced and shaped little holes. We do good, but its hard. Second, the vehicle by which this thing sticks to his belly is quite literally a sticker. When he moves, and babies do nothing but move, it peels up. When it starts to peel up and air gets under it it causes leaks. So we've done just about everything short of stitching it to his belly, and we can now get about 18-24 hours out of a bag. It just is what it is. We've talked to skincare specialists at the NICU. We've talked to wound care experts, people who deal with this kind of thing everyday, and the basic summary is that it just is what it is. The two stomas is kind of part of the problem. A lot of times when doctors do this kind of surgery they knot off the one end of the intestine and leave it inside, so there is just one end of the intestine sticking out (the end that the poop comes out of ).

I found a picture of a baby with one of these stuck to him (see below). Drew's pretty much looks like this too. Just a bag, usually full of liquid poo (remember its not going through his colon so its very very liquid) hanging from his belly. We try to tuck it up in his diaper, but gas also comes out this hole so it fills up with air and if its secured under his diaper it often causes it to leak or burst when it gets to full of air if its all folded up. We also have to use a giant syringe to suction out and measure the poop several times a day. If the bag gets to full it leaks (surprise, surprise). Plus the folks at the sixty five roses clinic need to know how much is coming out to determine whether or not the enzymes are providing the appropriate amount of fat absorption. Once the ostomy is gone we will just have to pay attention to wet and dirty diapers.

Hopefully this answers a lot of questions you might have, and hopefully I haven't grossed you out to much. This is why we can't really take him anywhere until the bag is gone. I know that there are people that live their entire lives with ostomy bags, and I feel for them. But for us and the success that we've had (or haven't) its just way to big a pain in the ass to clean poop off of a 9 week old baby in the back of a car and spend half an our getting the thing caulked back up and a new bag put on. So we'll just keep him home for a few more weeks. The appointment with the surgeon is on Monday and we're hoping we find out when we can have this thing fixed. They said its a simple surgery - open him up, sew the two ends back together, close him up, call it a day. I hope it goes that way :)

Do you ever hear a song and it takes you back to a time and place from the past that at that time was so special, so important? There are places that I go that will forever remind me of someone. Certain smells put me right back to a special time in my past. You hear something on the radio, a song, an event, anything, and its like you are right back to when and where something that made a difference in your life happened. And while I'd never want it to go away, I'm glad that they are just memories and it puts life into perspective.

There was this movie out several years ago, Eternal Sunshine of the Spotless Mind, and I loved it. I still think about it, and I'm thinking about it this morning. I got up with Drew at about 5:30 and after feeding him came downstairs to do his CPT. Instead of turning on the news, I queued up my Pandora Radio and it was like the flood gates to a million memories came flowing out. It was just what I needed this morning.

In Eternal Sunshine of the Spotless Mind, a girl has her memory erased after a bad fight with her boyfriend. Upon learning this, the boyfriend decides he too wants to have this procedure done, as he doesn't want to hold on to memories of a girl that doesn't even remember he exists. The procedure involves being put under and going back in your mind through each and every memory, good and bad, and reliving them before they are permanently erased. While going through this procedure, he is able to recognize that even though there were bad times there were a lot of good times as well that he doesn't want to forget. He wants to stop the erasing process, but its to late.

I remember going through lots of things in my life that I had wished, at times, had never happened. But I'd glad they all did and I'd never want to forget any of them. They've shaped me and taught me and put me where I am today. I had often looked back on my life and thought what if I had chosen a different college, what if I had married that boyfriend I had sworn I was destined to be with forever, what if I hadn't moved to Cincinnati, and on and on and on. It really really puts things into perspective.

I can't imagine going through what we've been going through with anyone but Martin. I can't imagine having any 3 kids other than the ones I've got. Our families and our friends are just perfect. And everything and everyone that I've come across in the past has helped me to land just where we are today. And those who aren't a part of my life anymore, for whatever reason, I don't want to forget them. I don't want a spotless mind, as tempting as it sometimes sounds.

Monday, May 17, 2010

Ella started to sleep through the night at around 8 weeks. By "through the night" I mean go to bed around 8 or 9pm and sleep straight through until 8am. We are having marginal success with these new two, now 9wks old. We have to "age adjust" because they were premies, so we are told to think of them as a month younger than they are, which would make them 5wks. I don't know how long you do that for.

A few nights ago, Lily took a long snooze over the nighttime hours, but Drew had different plans. Then the past two or three nights they have decided to switch rolls. We generally get them fed and put down by 10:30 or 11:00. On good days, Lily will wake up around 4 or 5, and Drew sleeps until 6. This works out nicely for several reasons. First, Martin gets up with the first round of wakeup's. (You might be thinking 'Gee thats great for Erin that she gets to sleep' but don't be fooled, i'm still up at around 1 or 2am to pump). Anyway, when I hear Drew around 5:45 - 6am I get up and take him downstairs for our normal morning ritual which includes 5 medicines, none of which he likes, a bottle, and his CPT (Chest Physiotherapy). The whole process takes just over an hour. So when Drew is up at 6, we finish up around 7, I can have some breakfast and coffee, and an hour to myself before the girls get up. This also allows Martin to get to work before 10am (mind you his work day is technically supposed too be 8:30-5:30).

Then there's days like today. Babies A&B both woke up at 4am, which means both parents wake up to feed them. I had been up about an hour prior to pump, so Lily was just getting a bottle. Lucky for us they both ate and were willing to go back to sleep. But at 8am the real madness begins. All 3 kids get up at once. Drew needs meds and a bottle, I need to nurse Lily, and someone needs to make Ella peanut butter toast (or whatever the breakfast item of choice is). There simply aren't enough hands. So we work together and get Ella in her seat with her breakfast and then I sit down to nurse Lily (who just happens to be very impatient). Martin prepares Drew's meds and gets them in him before giving him his bottle. At about quarter till 9, he is finally able to go back upstairs and get showered and ready for work. On a good day, hes out of the house by about 9 (today it was close to quarter after before he left). Then I am left with Ella, who just wants you to play with her for a little bit, Lily, who is dealing with some acid reflux issues and isn't to happy to be laying down for some period of time after she eats, and Drew, who is remarkably mellow, but needs his 30 minutes of CPT. Before we know it, its time for someone to eat again and the clock reads 11am.

The afternoons usually are the quite part of the day, with everyone eating between 12-1 and then napping for a few hours. We do have days where Ella decides she just wants to play in her room for 2 hours, which she does quite nicely. Its the post nap hours that are the problem then. I don't know any 2yr olds who can go a whole day without a nap, including mine. And its evident by the whining and crying and fighting everything for the rest of the day. But I cherish those few hours of quite time each afternoon, so do whatever you want, as long as you're not downstairs, and I shall deal with the aftermath.

I miss the days where I got to sleep until 8am and then just take it easy for the morning. I don't think they're coming back, at least not anytime soon, but my wonderful kiddies are worth is. And in case you think i'm complaining, I am, and I think i'm allowed to. Let me know if you have a problem with that and you can live a day or two in my shoes so you understand :)

Saturday, May 15, 2010

Well today was the big day! The weather could not have been more perfect for the GREAT STRIDES Walk.

Ella, Lily and I, along with my sister and a handful of good friends walked at Sawyer Point this morning. The Cincinnati branch of Team Doin' It For Drew raised about $8,500, and our team raised over $10K nationally (many thanks to our walkers in PA, CT, SC and HI!). Overall, our walk in Cincinnati raised $350,000 (not including donations turned in today) to fund research for sixty five roses. Thats awesome and touching. It was great to see so much support for this cause so close to our hearts. Over 3,000 people turned out to walk, young and old. Spirits were high and the mood was great. Its not easy (I don't think its ever going to be easy) thinking about the fact that Drew has this life threatening disease, but it is helpful and hopeful to see such an outpouring of support. Its the only thing thats going to cure this!

Here are some pictures from our walk...

Next year we hope to have bigger teams and raise even more money. All of your support has been and will continue to be appreciated.

Thursday, May 13, 2010

So yesterday we had a doctor appointment. We have a travel "ostomy changing kit" that we put together with the supplies we would need should the bag leak when we are out of the house. Mind you that the only times we have left the house with Drew have been to go to the doctor. And yes, all three times now, the bag which was perfectly secure just moments before leaving the house, has leaked within moments of arriving at the doctors office. Here's how yesterday went...

With the goal of arriving to the doctor on time (12:45), we packed the bag the night before. Thursday morning, we went along with our routine as usual. I planned to leave the house by noon so that I could get over there, get the kids inside (Lily comes along when they appointments will be long so that I can nurse her), get Drew fed (he was due at 1 so I wanted to get him fed a little early to avoid the chaos of what is feed him during the appointment) and be ready to go at 12:45. Once again, the best laid plans...

We pulled into the parking garage at 12:25. I decided it would be easier to get inside and feed Drew rather than trying to feed him in the car. The double stroller, incase you've never used one, is quite a piece of equipment. Good thing both kids are strapped securely into carseats and the carseats just snap into this apparatus, because they need the safety and support with how many corners I misjudge or walls I run into, forgetting the sheer length of this thing.

We got inside, and Lily immediately started screaming. (Suck on your paci Lily, Mommy needs to feed Drew). With 1 hand holding a pacifyer in Lily's mouth, and Drew in my other arm, I had to get the bottle out of the cooler bag, get out a spoon, the applesauce and a capsule of enzymes, open the enzymes and very carefully and pour them onto the spoon so as to not lose any, get Drew to eat them, and then get the bottle in. Lily didn't want the paci, Lily wanted to be held, but I was out of arms and Martin wasn't there yet. Either the Social Worker on the team knew we were coming (she usually comes to greet us) or she heard the commotion in the waiting room and thought help was needed. She picked up Lily until Martin got there. Drew has now eaten about half an ounce.

The nurse calls us back for a vitals check. Down to his diaper. DAMN YOU BAG!!! Yup, bag is leaking. Clothes are covered in poop. Drew is screaming because hes hungry and I gave him a teaser. Hooray! His weight is up! Okay, please give us a room so that we can get this thing changed and continue feeding him. I swear they put us in the smallest room there. Picture your garage when your car is parked in there. Now, bring in a doctor, a nurse, two parents and two screaming children. The stroller is seriously huge. We got the bag off, the poop wiped up, the wet diaper off, new outfit and DAMN YOU WEINER!!! Pee everywhere. Pick up Drew. Move everything off the table so that we can take off the wet crinkly paper and put nice new dry paper on the table. Finally got the bag changed and a new diaper and outfit on. Put the bottle back in Drew's mouth and puke. All over his new clean dry outfit. Well, we thought we had packed everything but the kitchen sink, but apparently with twins there isn't a diaper bag big enough to bring everything you MIGHT need. Luckily we were able to dry him off enough that we didn't need to put him in Lily's backup outfit.

We met with the doctor and everyone else there that we meet with, and just as we are ready to leave the nurse comes back in to remind us that we never actually got his vitals.

So does Drew! We had our second appointment at the Sixty-Five Roses Clinic this week and Drew officially weighs 8lbs 1.5oz. Our goal is to gain an ounce a day, and hes gaining just over that (an ounce and a third!). They are going to change the enzymes that hes taking to something that is more concentrated and that he will be on until hes 2 or 3. He will be on some enzymes his entire life (or at least until they find a cure), but the type and dosage will change as he continues to grow.

We also had a procedure done yesterday where they put some contrast (dye) into his distal stoma (the part of his bowel sticking out of his belly that leads to his butt) to make sure that it was all clear, and it was! The next step will be to meet with the surgeon at the end of the month to [hopefully] schedule surgery. We are so very much looking forward to putting this past us and moving forward with our lives.

Everything revolves around this stupid ostomy. It takes 2 people to change it, and its unpredictable when or if it will leak, so leaving the house has become a challenge. If we do, we can't go far because we have to be able to return at a moments notice.

Martin's mom (Meme) left this afternoon. She's been with us since the twins were born and it has been a lifesaver. I truly do not know what we would have done without her. Unfortunately, because we haven't had the surgery yet, we needed to set up a schedule to have an extra helper in the house so that there are always two of us here to change the bag when it does leak. Martin is working in the basement today and tomorrow. My sister will be in town for the weekend. My dad is coming next week. The following week Martin will be working from home again. That will certainly be a challenge as it will be the first week that I am really home alone with the three kids. Martin's only available to us if we need a bag change (or if another crisis arises). After that, his parents will be back for a few days before they head up to Chicago, at which time Martin will work from home again. Starting the first full week of June, Meme will be back until my mom can come out on June 22. God-willing, the surgery will be behind us by that point, and Gaga (my mom) will just be here to help out with day to day things and won't need to be certified in ostomy changing.

When Drew has the next surgery, he will be in the hospital for a minimum of 2 weeks. Poor guy already spent a month in there, and now that we've adjusted to life at home its definitely going to be hard to take him back. We will sit vigil with him again, working out a schedule so that someone is there 24hrs a day. Hes just getting to the point of recognizing people - looking in your eyes, smelling mom, the comfort of dad's swaddle after the midnight feeding - and we don't want him to lose that. Hopefully (hopefully!) the surgery will go smoothly and we will be in and out (in two weeks) and just not have to deal with that anymore. He will inevitably be in the hospital at other points throughout his life, but mostly for monitoring and treatment of his sixty-five roses, and not for surgery.

This weekend is the GREAT STRIDES walk in Cincinnati. The support we have received from family and friends has been overwhelming. Our team nationally has raised $8,500 so far! The walk this weekend is at Sawyer Point. Registration starts at 9am and the walk begins at 10. We would LOVE to have anyone and everyone who is interested walk with us. We're having a team picture taken at 9:20 am by the stage, so if you are there please come and join us. I will be going with Ella and maybe Lily, and Martin will be staying home with Drew. We haven't really done a whole lot with Drew in terms of leaving the house, simply because we can't risk him catching anything before this next surgery (and, per my previous comment that our world currently revolves around the ostomy, if the bag were to leak while we were out it would be a royal disaster). So Martin will be there in spirit.

Sunday, May 9, 2010

Martin and I went out for dinner last night. Theres a nice little place just at the bottom of our street that we had never been to. Both of my parents were in town, and Martin's mom was still here, so we figured that 3 grandparents could hold down the fort for an hour or two while we went out.

Its been a while. Pre-twins, I was very (VERY) pregnant and probably would not have fit in most booths. There were some take-out nights, but our evenings mostly went something like this: Martin gets home from work, Erin puts feet up and watches the Wheel to see if they call my Spin ID (believe it or not, i'm still in my 20's despite sounding like a senior citizen) until Ella goes to bed at around 8, Erin follows. I had the bed to myself as well! Martin moved to the guest room at around 30 weeks. Pregnant Erin gets up about once an hour to use the bathroom, and Martin, who is a light sleeper, wanted more sleep. So he packed up his pillows and moved down the hall. Fine with me!

On Saturday, March 13, we went to the hospital for the excavation. After about 24 hours of contractions, out came the babies. Luckily the epidural had worked, so there was minimal discomfort until forecepts were introduced in the ER, but we (said loosely) did it without c-section so I was happy. The next 24hrs were exhausting, as they are with any new babies, but we had no idea how tired we would be or how little we would get to see one another for the next month. Drew was taken to Children's, and Martin didn't spend another night at home until April 14th, the night Drew came home.

Oh happy day!! Drew is home! Oh no, where will Martin sleep now?! His mom, who has been staying with us since the arrival, has set up shop in the guest room. Does this mean hes going to be returning to MY bed?! Its so spacious, so comfortable, no middle-of-the-night fights over who has to many covers! But there were no other options.

We still didn't see much of each other. I went to bed after my feedings at around 8pm. Martin had the 12 & 1 shift and didn't usually go to bed until after that. In the morning, I was usually feeding Lily while he took care of Drew before leaving for work. We'd see each other briefly at dinner before he went to entertain Ella and I began the process of preparing for the next night. And so went the cycle.

Drew's been home for a month now and things have improved. Its not quite so chaotic anymore. We still can't really do much in terms of planning, but we are more prepared to handle the unexpected.

So both sets of grandparents (minus Grandpa Moore) are in town this weekend and we decided to take the opportunity to spend some time with one another over dinner and some drinks. At 6:00 we started to get ready. The restaurant is literally about 200ft. away, and our reservation was for 7:15. At about 7:14 we ran through the back yard and down the hill to make it time. We underestimated just how long it would take to prepare the family for an hour without us. Mixing bottles, measuring out meds, doing CPT (Chest Physiotherapy). But we made it. And it was good.

The food was great. The wine was better. The company and conversation was perfect. We needed a night out, to get to know one another again. We had appetizers at the beginning and dessert at the end. Then the phone rang. Drew's bag is leaking. DAMN YOU OSTOMY BAG!!!! At least we were done. We had the check at our table and it would only take 5 minutes to walk back up the hill (okay it took 10 to go up the hill...its a lot bigger on the way up). We really did have a wonderful evening, and we really cannot wait until the stupid bag is gone and we can do it again!

Saturday, May 8, 2010

Today was the Great Strides Walk in New London, CT. Martin's brother John and his family walked, along with his dad and other brother Brian. They raised $900 for sixty-five roses!! They all made t-shirts to wear as well. Here is a picture:

When Ella was around 8wks old, she started sleeping through the night. The twins will be 8 weeks tomorrow. Because Drew needs a certain number of calories per day (550 at minimum) we need to make sure that we feed 80ml of 30 calorie per ounce formula or fortified breastmilk 7 times a day. That was a improvement over the 70ml of 28 calorie stuff we were giving him 8 times a day. We had been waking Drew every 3 hours, and then waking and feeding Lily when we were finished to avoid her inevitably waking us up moments after we went back to sleep. I'm completely against waking a sleeping baby, so its hard getting out of bed to feed Drew. But you do what you have to do.

So the other night we decided that we were going to experiment and see how long they would sleep for if left alone. SEVEN HOURS!! Yes! 7!! Okay, time to change the schedule. I'm no math wiz, but we figured our that if we fed him just over 90ml six times a day we would hit our number. We changed our schedule to 7am, 10am, 1pm, 4pm, 8pm, 12pm to make sure we got our 6 feeds a day in, but we were stuffing the poor little guy trying to feed him 90ml (thats just about 3oz) per feed. But we got it in, and hoped for the same 7hr stretch the next night. The best laid plans....

Both Lily & Drew were fed at 8pm, wrapped up and put in their cribs. I followed to bed shortly thereafter. At about midnight we heard them crying. Martin got up to take care of them. Around 2:30 he woke me up to pump. By 3:00am someone was awake and screaming and it was my turn. I made my way down the hall, and there was Drew, wailing away. I went back in to Martin and asked when they had eaten, and he said that he just fed Drew at 2:30 for the second time and that he wasn't hungry again. So I rocked him. I changed his diaper. I rocked him some more. After about a half an hour of him being unsettled, I decided to swaddle him up and let him cry it out. (Time to toughen up, boy!) Just as I was putting him down, Ms. Lily started to wail. I knew she hadn't been fed in a while, so since I was in there I decided to nurse her to buy us more sleep. Well, Drew just wasn't having this, so he cried and cried and screamed and yelled, until he woke up Martin. Martin came into the nursery, very tired and confused and asked what was wrong with Drew. Here's how the conversation went:

Martin: What's wrong with Drew?

Me: I have no clue. I rocked him and changed him and swaddled him, and I have no clue.

Martin: Well did you feed him?

Me: No, you told me he had just eaten for the second time in about 3 hours and that he wasn't hungry.

Martin: Um, I must have been sleeping when you were talking to me because he ate at about midnight so hes probably starving.

In the morning, we agreed to work under the assumption that if they wake up at any point during the night that they are hungry - feed them. This will avoid future miscommunication in the middle of the night.

We just started our fundraising efforts within the past few weeks. The support we have received is incredible, both from our families and friends who will be walking as well as all of the donors. You have touched our lives in a way that you cannot imagine. The one this matters most to cannot personally thank you...yet. But he will. When a cure is found, when he doesn't have to take all of these meds, when he doesn't have to spend an hour of his day doing airway clearance, he will thank you, and we will forever be in debt to you for saving our son's life.

Monday, May 3, 2010

Until today, I've been referring to Drew's surgeon as Dr. Daniel Van Aultman. I've only seen him twice in my life, both times in scrubs, or talked about him over the phone with Martin when Drew was in the hospital. Today, when I signed in at his appointment, I noticed that his name is actually Dr. Daniel Von Aullmen. Close enough.

So there was good news and not so good news. The good news is that Drew looks great. He's gaining great weight (7lb 5oz!) and doing well otherwise. The bad news is that this means they don't feel a need to rush into his next surgery. They would do the surgery tomorrow if he had poor weight gain, his skin was breaking down under the ostomy bag, or there was some issue with the stomas (thats what they call the two ends of his bowel sticking out of his belly). Fortunately for Drew, hes having none of these issues. Unfortunately for us that means several more weeks of suctioning poop out of the bag to measure it, dealing with the inevitable 4am leak, and the stress that comes along with restraining him to get the bag changed.

It seems counterintuitive that since hes doing well they don't want to do the next surgery yet. However, whats most important is his growth, and with another surgery there will be some weight loss, risk of infection, and all the other good stuff that comes along with any surgery. People live their entire lives with colostomy's. The logic of doing the surgery if there was poor weight gain or broken down skin or something is simply that once the intestine is back together and things can just pass through it in its entirety, there is better nutrient absorption and hopefully weight gain and growth (all the things we're currently experiencing with that bag that will hopefully & likely just continue to improve after hes reconnected).

SO, we wait. We go back to the doctor in 4 weeks and hopefully schedule surgery at that time. We've heard that it takes 2-3 weeks to schedule a surgery so in all likelihood we have 6-8 weeks left before we can move past this challenge in our lives.

Ella is of the age of imitation. We have recently learned what words and phrases we use most by listening to what she has to say. When Grandpa was in town, he used the phrase "Holy Mackerel " which Ella repeated for a few days at choice points in conversation. The other day she was looking for her shoes and I told her they were by the front door, to which she responded "Oh, right". She was standing over Drew in the bouncy seat the this morning shoving a pacifier into his mouth going "Open mouth, homeboy". But Meme, (what she calls Martin's mom) takes the cake for most repeated statement. I was telling her about something that one of the doctors had told us and she said "Oh, God!". Now, when you tell Ella that its time for a bath she says "Oh God, oh God!". Or when you tell her that we need to come inside to eat lunch she says "Oh God, oh God!". Or when she can't find one of her "people" she says "Oh God, oh God!". Its a good thing that over the past year and a half we have modified our language and shes not running around saying "Oh sh*t!"

GREAT STRIDES: Taking Steps to Cure Sixty-Five Roses is the CF Foundation's largest national fundraising event. Tens of thousands of co-workers, friends and family come together each year as one community for one cause…to help find a cure for CF. In 2009, nearly $35 million was raised to support vital CF programs.

This year, our family will be walking for Drew in the GREAT STRIDES walk at Sawyer Point on May 15, 2010. Please help us meet our fundraising goal by sponsoring us. Your generous gift will be used efficiently and effectively for vital CF programs to support research, care and education.

Since sixty-five roses is considered an orphan disease, they receive no federal funding for their programs and depend exclusively on individual and corporate donations. Making a donation is easy and secure! Just click here to go to make a donation that will be credited to my team. Any amount you can donate is greatly appreciated!

So we went to the Sixty-Five Roses Clinic last week where we meet with the doctor, a nurse, a dietician/nutritionist, a social worker, and a number of other people. The dietician spent a fair amount of time looking for pictures that she had of dirty diapers. Poop is very important in the world of CF. We have to be able to identify when there is too much fat in the poo, indicating that his enzymes would need to be increased to help his pancreas hold onto that fat that he needs so that he continues to grow and gain weight.

Lucky for us, she was unable to find the pictures. I'll go ahead and trust my instincts. When the poo looks odd I'll just go ahead and give them a call and let them decide.

Drew spent the first month of his life in the hospital. Having his twin sister home along with Ella, was definitely an exhausting task. I have to admit that it was a nice transition into having twins. While exhausting to drive back and forth to the hospital, we had NO IDEA how tired we'd be once we had him home.

Drew had a surgery which resulted in an ostomy. Basically, his bowel, rather than being inside of his body and disposing of waste in a diaper, sticks out of his belly and empties into a bag. GROSS-O, you're not the only one thinking it! Well, to complicate things even more, this bag leaks, daily, hourly sometimes, and every leak earns him a bath, and a half hour on the "ostomy changing station" that we set up in our bedroom. It takes two people about a half an hour to peel this bag, filled with poo, off of his tiny belly while he screams and cries, not usually because it hurts, but because we need to restrain him. The only thing worse than having baby poop all over your hands is having a baby with baby poop all over his hands. It really is miserable and most annoyingly time consuming. We're hoping that that will be reversed soon so that we just have diapers to deal with.

Drew has a very special diet that he needs to follow. Its a special (and very expensive) formula that I'm sure most of you have never heard of (Elecare). You can't get it in stores, special order only. Normal formula or breastmilk is 20 calories per ounce, but Drew needs 30 calorie per ounce, so we have recipes that we follow for beefing up the calorie count. There is a mixing session every evening that lasts about an hour. Additionally, he needs to eat this every 3 hours (Oh sleep, how I miss you). Our chunky monkey Lily eats every 4 hours. And different formula than Drew. When shes not nursing. So we run shifts throughout the day and night of who feeds who what and when and how much. And sleep, well, you get the picture. Furthermore, he gets a spoonful of applesauce and enzymes everytime he eats so that his pancreas can break down the food and help him to retain the fat. Oh, and all of this needs to be charted for the Dietician at the sixty-five roses clinic. Our kitchen looks like a chemistry classroom.

The important thing is that Drew is doing well. He weighed 7lbs at his appointment last week. (3.2 kilograms actually. We've become proficient in the metric system. We had to if we wanted to know what all the doctors and nurses were talking about. He east 75ml every 3 hours with the goal of gaining 28.3 grams per day).

"65 Roses" is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce.. Sixty-five Roses, as a blog address, was taken, so we went with sixty six. The reason I chose sixty six instead of some other creative name, is that I'm hoping with everything I have, that by the time Drew is talking, we will get to explain that sixty-five roses was a thing of the past, that we've moved on :)

Going forward, I shall refer to the disease only as Sixty-five Roses.

Let me tell you what we know and understand about this disease. First, there is no cure. Sixty-five roses is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

clogs the lungs and leads to life-threatening lung infections; and

obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with sixty-five roses lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of Sixty Five Roses

People with CF can have a variety of symptoms, including:

very salty-tasting skin;

persistent coughing, at times with phlegm;

frequent lung infections;

wheezing or shortness of breath;

poor growth/weight gain in spite of a good appetite; and

frequent greasy, bulky stools or difficulty in bowel movements.

Statistics

About 1,000 new cases of sixty-five roses are diagnosed each year.

More than 70% of patients are diagnosed by age two.

More than 45% of the CF patient population is age 18 or older.

The predicted median age of survival for a person with CF is more than 37 years.

The Sixty-five Roses Foundation (www.cff.org) has built a dynamic "pipeline" for the development of more new potential CF therapies than ever before. To treat a complex disease like CF, therapies must target problems in the airways and the digestive system.

In the CF drug development pipeline, there also are promising new therapies designed to rectify the cause of CF — a faulty gene and/or its faulty protein product.

The purpose of my blog is to raise awareness and support for the CF Foundation. Very sadly, since sixty-five roses is considered an orphan disease, they receive no federal funding for their programs and depend exclusively on individual and corporate donations.

Please consider making a donation. Drew's life literally depends on it. Research has come a LONG way in a short time, and hopefully, very hopefully, this disease will change from a life-ending disease to a chronic disease to a cured disease in his lifetime.

"65 Roses"is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce.

This blog, 66 Roses, is dedicated to finding the cure.

Cystic fibrosis is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). Thick mucus clogs the lungs and leads to life threatening infection. The pancreas is also obstructed by this thick mucus production, imparing digestion and leading to malnutrition. - www.cff.org